Genetic Information Nondiscrimination Act Legislation
Public Law 110-233, H.R. 493, S. 358
What is the Genetic Information Nondiscrimination Act?
The Genetic Information Nondiscrimination Act (GINA) of 2008 was signed into law by President George W. Bush on May 21, 2008. GINA prohibits discrimination on the basis of genetic information with respect to health insurance and employment. It was passed to establish basic legal protections that will enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies that will result from the scientific advances in the field of genetics. It also prevents health insurers from denying coverage or adjusting premiums based on an individual’s predisposition to a genetic condition and prohibits employers from discriminating on the basis of predictive genetic information. GINA will stop both employers and insurers from requiring applicants to submit to genetic tests, maintain strict use and disclosure requirements of genetic test information, and impose penalties against employers and insurers who violate these provisions.
What does GINA Mean?
A Guide to the Genetic Information Nondiscrimination Act
This tool provides a functional outline of GINA’s protections and how the legislation impacts every individual in the nation. The resource includes a history of the legislation, hypothetical situations of genetic discrimination, and key examples and definitions. We encourage individuals and organizations to utilize the guide either as a resource for answering questions or as a flexible tool to adapt and customize within their communities.
What is happening now?
Title I of GINA: Health Insurance
On October 10, 2008, the agencies charged with writing regulations issued a Request for Information (RFI) in the Federal Register. The Departments of Health and Human Services, Labor, and the Treasury solicited comments from the general public for Title I of GINA, pertaining to health insurers in the group, individual, and Medicare supplemental policy markets. These provisions took effect on May 21, 2009. Utilizing input from the genetics community, Genetic Alliance undertook the process of responding to the RFI, in addition to encouraging individuals and organizations to craft their own response. Comments were due to the Departments by December 9, 2008.
View the RFI from the Departments.
View the Genetic Alliance response to the RFI.
On October 1, the Departments of Health and Human Services, Labor, and the Treasury released an interim final rule, in conjunction with a notice of proposed rulemaking and request for comments, that implements Title I, or the health insurance provisions, of GINA. Under Title I of GINA and the interim final rule, group health plans and issuers of group and individual health insurance cannot deny enrollment, raise premiums, or impose preexisting condition exclusions based on genetic information. Health insurance issuers are also prohibited from requesting or requiring genetic information or genetic tests for underwriting or enrollment purposes. The associated notice of public comment opened a 90-day public comment period for the public to respond to the interim final rule, which closed on January 5, 2010. On December 7, 2009, the interim final regulations for Title I of the Genetic Information Nondiscrimination Act (GINA) of 2008 took effect!
Also in on October 1, the Office of Civil Rights (OCR) in the Department of Health and Human Services issued a proposed rule to modify the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule to clarify that genetic information is health information, and to prohibit the use and disclosure of genetic information by covered health plans for underwriting purposes. Genetic Alliance submitted a response to the proposed rule utilizing model comments crafted by the Genetics and Public Policy Center.
Title II of GINA: Employment
On February 25, 2009, the Equal Employment Opportunity Commission (EEOC) released a notice of proposed rulemaking (NPRM) for Title II of the Genetic Information Nondiscrimination Act (GINA). Title II of the law protects individuals from genetic discrimination in employment, and these provisions took effect in November 2009. The NPRM opened a 60-day comment period that allowed the public to provide input regarding the implementation of GINA. Utilizing model comments crafted by the Genetics and Public Policy Center, the Coalition for Genetic Fairness Executive Committee, of which Genetic Alliance is Chair, developed a response to the NPRM. The deadline for submitting comments to the NPRM was May 1, 2009.
November 21, 2009 marked the 18-month anniversary of the signing of the Genetic Information Nondiscrimination Act (GINA) of 2008 into law, and the date the Equal Employment Opportunity Commission (EEOC) assumes responsibility for enforcing Title II of the Act’s landmark protections. Title II of GINA provides protections against genetic discrimination in employment settings by prohibiting employers from using genetic information to make hiring, firing, or promotion decisions and limiting an employer’s right to request, require, or purchase an employee’s genetic information.
Legislative History of GINA
View a detailed account of the status of GINA from January 2007 to the date of its passage.
What is Genetic Alliance doing?
As leaders of the Coalition for Genetic Fairness, Genetic Alliance is working to ensure that no one is discriminated against—in health insurance or employment—based on their genetic information. In the regulatory process, we are committed to ensuring that the resulting regulations for GINA are clear, transparent, and accurately reflect the new law. Furthermore, Genetic Alliance provides forums and open space for dialogue surrounding protections against genetic discrimination and the impact of GINA on healthcare delivery, research, and emerging technologies. We will continue to raise awareness of this law and create and disseminate a variety of educational resources and tools.
Related Links:
- Learn about the Coalition for Genetic Fairness.
- View the Coalition for Genetic Fairness online and print resource titled “What Does GINA Mean? A Guide to the Genetic Information Nondiscrimination Act.”
